Lisa Machado is the founder of the Canadian CML Network (cmlnetwork.ca), a national patient support organization based in Toronto, Ontario, Canada. She has been living with chronic myeloid leukemia since 2008. She can be reached at info@cmlnetwork.ca.

Lisa Machado

When waiting for the findings of a cancer test, “I had already made up my mind that I was definitely not going to get my results online,” says Maureen Barlow, a Toronto-based graphic designer. “I couldn’t imagine sitting in my living room on my laptop and getting my diagnosis without a doctor to decode the pathology jargon, skimming through the paragraphs of clinical notes until I found the dreaded word, ‘carcinoma.’”

The 48-year-old had been complaining to her family doctor about a strange ache in her armpit for more than a year when, finally, she was referred to a breast surgeon at Toronto’s Mount Sinai hospital who ordered her a mammogram, an ultrasound and then a biopsy to be done at the nearby Princess Margaret Cancer Centre. Princess Margaret is a part of the University Health Network (UHN), which is made up of five hospital sites and operates a secure website called myUHN that allows patients in the network to see their results and appointments in real time.

“At Princess Margaret, I was set up on the myUHN Patient Portal (which requires a registration code that is given to patients at their clinic) and told that the (biopsy) results would be available in 10 to 14 days,” Barlow says. “Six days after the biopsy and two days before my appointment with the breast surgeon, I got an alert from the portal saying I had new results.”

Barlow, who had long expected that she had breast cancer, stayed true to herself and waited until her appointment so she could go over the results with a doctor. But even though that’s the way it was always done before the era of digital technology, she felt he was hoping she already knew what they were going to talk about that morning “He said, ‘So you’ve seen the results?’ and then I told him that I had chosen not to look online and that I wanted the news from him,” she says. “He looked slightly weary and then, of course, delivered the expected blow, telling me that I had inflammatory breast cancer.”

This conversation was a critical part of Barlow’s cancer experience, she says; it was important to her to hear the details of the diagnosis and next steps in person. “I also needed to see his face to see if I could glean any good news. Unfortunately, he kept saying, ‘This is not good.’”

The upside to waiting for her results was that, once she had them, she was hustled over to a nurse right away to set up all of the necessary appointments, instead of reading the results online and then having to endure an anxious wait.

While getting scary test results online without medical guidance is not for the faint of heart, it turns out Barlow is in the minority when it comes to finding out health results in real time. Many people are taking advantage of the growing number of patient portals that electronically share health information with patients with the goal of giving them ownership over their own health care. Shared privately, the information can give patients the opportunity to check their health records for accuracy, find out when upcoming appointments are and prepare for them, and review facts they missed during talks with doctors.

“Ninety-four per cent of patients prefer to look at their results as soon as they are ready, even if they could be worrisome,” says Vasiliki Bakas, manager of the myUHN Patient Portal, citing results of a survey that looked at patient perceptions of myUHN and of the practice of accessing test results online. The same percentage feel better prepared for appointments and report better management of their care when they have early access to their results, and 92 per cent feel better able to make decisions about their care, the survey found. Ten per cent of patients found incorrect or outdated information in their portals, improving the safety of care by allowing them to point out the problems, a summary of the survey results stated.

The survey, completed by almost 10,000 UHN patients, was launched in fall 2017, about nine months after myUHN expanded across all hospital sites. Bakas notes that the findings echoed feedback received from patients after the initial launch of myUHN in seven early-adopter clinics. Meanwhile, a survey of nearly 800 staff members in early 2018 found 83 per cent in favor of patients being able to decide how they want to access their results. Seventy-six per cent believe that waiting for test results causes anxiety for patients, and also that portals improve patient-provider communication. Eighty per cent said the portal improved management of care.

But what happens after patients receive online results that leave them wondering about the gravity of their condition or how it will be treated?

“We have received anecdotal feedback that calls to physicians and their offices about results have increased,” Bakas says. “In our evaluation, 41 per cent of staff reported an increase in calls, 39 per cent responded neutrally and 20 per cent reported no increase.” Bakas notes that her team has developed patient and staff resources and training to help with these challenges.

Dr. Jeff Lipton, a medical oncologist at Toronto’s Princess Margaret Cancer Centre, says that while access to test results can sometimes be helpful because patients don’t have to contact him for results, his workload has increased since the portal’s inception because patients frequently contact him anyway to ask questions about those results — a situation that can be frustrating and taxing on the doctor-patient relationship.

“I generally have troubles with the portal because most patients don’t understand the results or how normal values are obtained, and do not see or understand the trends,” he says. “It generates a lot of anxiety and a million irrelevant questions, and then patients are jumping from the portal to the Internet and self-diagnosing.”

Dr. Lipton’s experience may be a clue as to why the province of Nova Scotia has taken a bit of a different approach to allowing patient access to test results. MyHealthNS, which launched in 2016, puts the control over information in the hands of doctors instead of patients.

“We have given family doctors the ability to manage their own practice settings for the release of results to their online patients,” says Andrew Preeper, media relations adviser at the Nova Scotia Department of Health and Wellness, adding that physicians are advised to explain possible outcomes to patients when tests are ordered as a way of managing expectations and reducing anxiety.

“Unlike some jurisdictions in Canada, where patients have access to results as soon as they are available from the lab, some doctors have set up a hold so they are sure to have reviewed the results before sharing them with the patient,” Preeper says.

Despite these challenges, patient access to test results signals a significant turning point in patient care, Preeper says.

“A major advantage is that the old ‘no news is good news’ approach to sharing test result information is replaced by a much higher standard,” he says. “Not only does this improve the level of patient involvement in their own care, but it adds a new dimension of quality to the patient experience.”

Online access to tests and health records also offers enhanced efficiency for both patients and physicians, since it reduces the number of appointments that have to be made, which opens up time for other patients, Preeper says. Other advantages, he says, include improved safety, since patients can check that their medical information is correct and push for follow-up care after receiving results.

One only has to think back to the tragic story of 31-year-old Calgary resident Greg Price, who died in 2012 of complications from testicular cancer that was diagnosed too late because of referrals to specialists that were never carried out and diagnostic reports that were never acted on. The well-known story also inspired a film called “Falling Through the Cracks: Greg’s Story,” which has become a part of the curriculum for first- year medical students at the University of Calgary and helped to launch a study into Price’s death by the Health Quality Council of Alberta (HQCA). One of the conclusions made by the HQCA was that patient access to electronic reports and the ability to track specialist referrals needed improvement.

“Patients who have their reports and results are better informed on their health status and can make more informed decisions about health care and manage their health,” Preeper says.

“Having access to your test results is a great thing,” says Machado, of Toronto. “Sure, if I see scary results, I Google everything. But I want to know. I feel it softens the blow of bad news. And good or bad, I want to know. It’s my right as a patient.”

Machado was diagnosed with stage 4 hepatocellular carcinoma, an aggressive liver cancer, in September 2014 at the age of 39. After five radiation treatments over two weeks and almost two years of taking a daily oral cancer medication called Nexavar (sorafenib), he was told in June 2016 that he was cancer-free. Since then, he has had a scan every three months to check for relapse, and after every scan he logs into myUHN to find out the results. Last year, as he skimmed through the report, the word “metastasis” made him catch his breath.

“Sure, it was scary, but the anxiety of waiting between the test and the doctor’s appointment is way worse,” he says. “First, online access lets me find out things that put my mind at ease. For example, I had been worried about a strange pain around where my liver was, but I saw in the report that I had a fractured rib, which stopped my anxiety and saved me a trip to the doctor. There are three weeks sometimes between the scans and when I see someone. I can’t wait that long to find out. That’s three weeks of anxiety.”

While you might argue that knowing bad results for three weeks before seeing a doctor would make anxiety worse, Machado disagrees.

“You are worried already,” he says. “I want transparency. I want to see what they write. I want to know what’s happening. I also want a moment to freak out by myself without a doctor telling me how I should react.”

Machado does believe there are a few aspects of patient portals that could be improved. One would be for healthcare facilities to allow immediate contact between the patient and the treating doctor in cases where the diagnosis will cause significant worry and anxiety, such as in cases of cancer.

Digital health in Canada has been slowly coming of age over the last two decades, largely driven by Canada Health Infoway, an independent, federally funded, not-for-profit organization with a mandate of getting digital health solutions like electronic health records into use across Canada to help Canadians manage their health better.

Infoway, which collaborated with the government of Nova Scotia to develop MyHealthNS, is governed by 14 federal, provincial and territorial deputy ministers of health, and in 2018 it launched its Driving Access to Care strategy to increase the use of digital health solutions in Canada. The strategy includes ACCESS 2022, a movement to provide more Canadians with access to their personal health information and to digitally enable health services anytime and anywhere from the device of their choice. Infoway’s mandate means that comprehensive digital access, for records ranging from electronic medical records to test results, will eventually be available to patients and clinicians in every part of Canada. Currently, the extent of digital access across the country ranges from comprehensive, like myUHN in Ontario, to none at all, as is the case in Newfoundland, where Karen Pike lives.

Pike, who lives in Portugal Cove-St. Philips, just 15 minutes outside of St. John’s, relies on follow-up appointments with her doctor in order to find out test results. She can request results before an appointment as well as health records, but she has to pay for them.

“Copies of test results can be requested through a release-of-information application to the Health Information Services Department,” she says. “While the fees vary depending on what’s requested, it’s generally $10 for up to 25 pages and 25 cents for every page above that.”

Pike says that when online access comes to her province, she will definitely use it to keep up with medical tests and reports. However, she acknowledges that it’s not for everyone.

“I believe when it comes to access, it’s great for what you actually understand, but when it comes to results, we should leave it to the professionals,” she says, adding that it’s important to remember that they are experts and skilled at interpreting the results. “Ask questions, absolutely. You are your best advocate. But we, as patients, have enough to deal with just living with diseases. We can do without the additional role of having to worry about what exactly results mean.”

Despite Barlow’s initial reluctance to read her reports online, she now embraces the portal.

“After the initial shock wore off, the former scientist in me got curious,” she says. “I calmly went online and read the results on my terms. I was able to look up definitions and was comforted by the fact that my story to this point was on record, and that I had access to it.” She adds that patients don’t always get to see the actual test results or pathology reports, but it helps “to give the whole picture,” especially if you miss something during an appointment.

“It’s so easy to miss something that the doctor says during an appointment,” she says. “I’ve often read and re-read their clinical notes to clarify something I was unsure of.”

Barlow is now a cancer survivor, but because she is still on active treatment, she continues to use the portal for test results as well as appointment updates.

“I actually really enjoy being able to see these results and compare them to previous results as a graph,” she says.

In Preeper’s opinion, online access to health information is “a new frontier in health care.”

For Canadians like Barlow, Machado, Pike and others, it’s a frontier that promises to transform the way patients interact with Canada’s health-care system — and may improve the quality of care.

Articles

Real-time access to test results and doctors’ reports is putting control over health into the hands of patients.

Power to the Patients

When Karen Formosa was told that she had stage 3 BRAF-positive melanoma last March, there was one question that kept her up at night: How was she going to pay for the $20,000-per-month targeted treatment regimen she needed to stay alive?

“The doctor told me how much the medication was and I got really scared,” the 57-year-old, of Milton, Ontario, says of the drugs Tafinlar (dabrafenib) and Mekinist (trametinib). “I had a daughter and a granddaughter, and I was newly married. I didn’t want to die, but I also had no idea how I was going to afford the drugs I needed.”

Formosa did what most Canadians with cancer do when they are facing huge medication expenses: She applied to a provincial government program for financial help. In Ontario, that is the Trillium Drug Program, available to residents with a valid provincial health card who spend a large part of their income on prescription medications.

At the same time, she contacted her employer’s private insurance provider, Green Shield, desperately hoping that the drug plan she had paid into for 15 years would cover the expensive treatment that would give her a fighting chance against the aggressive cancer. In just two days, Green Shield notified Formosa that it would cover 100 per cent of her prescription costs. Nearly two months later, Trillium let her know that her application had been accepted.

“If I didn’t get that medication, the doctor told me I would be dead in two years,” she says. “I was ready to cash in all of my registered retirement savings. It was awful. You assume that in Ontario — in Canada &mdash; lifesaving medications are paid for, but they aren’t. And until something like this happens, you don’t realize how important that coverage is.”

Although Formosa’s story had a happy ending because she got the medication she urgently needed, many patients with cancer are not so lucky. Drugs are covered by the health-care system in Canadian hospitals, but outside their doors that coverage disappears for some. Canadians often see news stories quoting devastated parents who can’t afford lifesaving treatment for their child. Some Canadians are forced to choose between buying food or necessary medications. Some split tablets in half to make them last longer, skip doses or don’t fill prescriptions at all.

This is because some in Canada lack a private drug plan and have insufficient public coverage due to Canada’s “postal code lottery,” an inconsistent framework of public drug plans that offers coverage to everyone in some provinces but only portions of the population in others.

To make matters worse, many drug plans include deductibles and/or co-pays, the list of covered drugs may differ from plan to plan, and private plans may refuse coverage due to pre-existing conditions. Depending on where they live, this can be a big problem for people who need expensive medications.

An example of this is that oral cancer drugs aren’t publicly funded everywhere: There are significant gaps in coverage in Ontario, New Brunswick, Prince Edward Island, Nova Scotia and Newfoundland and Labrador. That means that people with cancer in these parts of Canada are suffering twice: dealing with the shock of having cancer and then the sticker shock of lifesaving treatments.

Due to the frustrations this system breeds among many stakeholders, there have been discussions around universal and public coverage for prescription drugs in Canada since the 1960s. Yet the issue has remained low on the policy agenda — until now.

In last February’s budget, Finance Minister Bill Morneau announced the creation of an Advisory Council on the Implementation of National Pharmacare. Its work led to a proposal titled “A Prescription for Canada: Achieving Pharmacare for All,” which recommends that Canada implement a universal, single-payer, public pharmacare program that would be rolled out over the next eight years. Such a program would make medications available to every Canadian, regardless of how much money they had and no matter where they lived.

The plan is just a recommendation, and while the Liberals in office have committed to a national pharmacare plan, they haven’t committed to the one in the council’s report. Prime Minister Justin Trudeau has referred to the report as a “foundation” for a national pharmacare program. Ultimately, it will be up to the party that wins October’s election to decide whether to move ahead with the council’s plan, change it or scrap it.

In the meantime, Canada remains the only country in the world with universal health care that doesn’t provide prescription coverage for all.

Throughout 2018 and into early 2019, a seven-member team led by Dr. Eric Hoskins — a family doctor who left his post as minister of health and long-term care in Ontario to chair the council &mdash; travelled across the country, stopping in every province and city. The team spoke with patients, caregivers, health-care practitioners, academics and policy-makers about their experiences with getting the medicine they need and their thoughts on a pharmacare program.

In meetings with the council and with other organizations that put together grassroots gatherings, patients and their families shared their reality: the good that can happen when someone gets the drug they need and the bad that happens when they don’t. Sometimes they brought the stark results of the latter, such as a child whose father was taken by a disease for which he couldn’t afford the lifesaving treatment because of where he lived.

There was also discussion of the cycle of emergency-room and hospital stays that arises from people not taking the medications they need, the impact of drug hardships on emotional wellness and family relationships, and the effects of untreated illness on workplace productivity.

The council’s report found that 20% per cent of Canadians (7.5 million people) don’t have drug insurance — or have inadequate insurance to cover medication costs. Nearly 3 million Canadians were unable to afford one or more of their prescriptions in the past year, despite the fact that 38 per cent of them had private insurance coverage and 21 per cent had public coverage. The council also reported that almost 1 million Canadians cut back on food or heating in order to pay for medicine and about 1 million had borrowed money.

“After hearing from many thousands of Canadians, we found a strongly held belief that everyone in Canada should have access to prescription drugs based on their need and not their ability to pay, and delivered in a manner that is fair and sustainable,” Hoskins wrote.

To determine what drugs would be covered, the council proposed the creation of a Canadian drug agency that would develop a list of “essential” medicines to be covered under national pharmacare as of Jan. 1, 2022. This list of medicines, the report suggests, would be based on “the most commonly prescribed clinically important drugs,” using two lists as a starting point: the World Health Organization’s Model List of Essential Medicines (which has approximately 450 drugs) and the CLEAN Meds list (with 136 drugs) developed by St. Michael’s Hospital in Toronto.

Once the essential medicines list was in place, the council proposes the development of a comprehensive national formulary based on effectiveness and good value for money, to be completed by Jan. 1, 2027. After that, new drugs would be subject to the same approval criteria as they became available. The council also acknowledged the importance of drugs used to treat rare diseases, proposing that a national strategy be developed to determine what rare-disease drugs should be funded and for which patients.

Besides the issue of access, there’s also cost. Pharmacare for all would be an expensive program to implement, costing just over $15 billion per year by 2027 when it would be fully up and running. But there are also savings to be had, the report argues. In early 2022, when national pharmacare would begin to cover essential medications, total Canadian prescription drug spending would be $300 million lower than without pharmacare, because the program would allow drug plans to band together to negotiate lower prices for many drugs, in addition to using other cost-saving strategies. By 2027, drug spending would be $5 billion lower than without pharmacare, the report forecasts.

“A recent study looked at what would happen if out-of- pocket costs were removed from medications for just three diseases — diabetes, cardiovascular disease and chronic respiratory conditions,” the report states. “It concluded there would be 220,000 fewer visits to emergency depart- ments and 90,000 fewer hospitalizations annually &mdash; a potential saving of up to $1.2 billion a year.”

How would these savings be passed on to the average Canadian? First, the council proposes to limit out-of- pocket prescription spending to $2 to $5 per prescription, with a maximum of $100 per person or household, which could translate into $350 in annual savings for a family. This is based on the report’s finding that showed that the average family spends about $450 each year on prescriptions.

Canadian businesses are also set to reap some savings under the pharmacare proposal. A business that provides drug benefits to employees would save $750 annually per employee, while employees would save more than $100 per year in drug plan premiums.

But here’s the rub: No one knows for sure how the plan would come to pass, since there’s nothing specific in the report about how the government plans to pay for it.

Brent Skinner, CEO of the Canadian Health Policy Institute (CHPI), believes that the only ones on the hook for the plan will be taxpayers.

“Single-payer pharmacare will disrupt employment- based drug benefits for 23.2 million privately insured Canadians and increase the tax burden for the 13.7 million Canadians who pay 95 per cent- of federal-provincial income taxes,” he said in a post-pharmacare announcement CHPI news release. “These voters have a lot to lose under the council’s plan.”

Just months before an election, it’s easy to be skeptical, guessing that pharmacare may be a little less about Canadians and their drug coverage needs and a little more about a political move to position the Liberals well with Canadian voters. It’s a “perfect document for a federal government looking for a health platform for the upcoming October election,” says Louise Binder, a Toronto lawyer and health-care advocate who serves as a health policy consultant for Save Your Skin Foundation (SYSF).

Pharmacare will certainly be a noteworthy issue in the upcoming election. The Conservatives are focused on how the cost of implementing pharmacare will be paid; they would prefer a program that fills in the gaps in drug coverage to protect the most vulnerable. The New Democratic Party claim they were in pharmacare territory first and that they can implement the plan faster. The Liberals are banking on voters believing they can do it just as well, if not better.

Critics of the plan warn of tax increases, reduced access to medicines and increased federal involvement in provincial jurisdictions.

The Canadian Partnership Against Cancer (the Partnership) supports the ideal behind Pharmacare for All, saying the plan is aligned with its own strategy. In its 2019 Canadian Strategy for Cancer Control released in June 2019, the Partnership called for reducing barriers that people face in getting the treatment they need, with the long-term vision that fewer Canadians will develop cancer, more people will survive the disease and those living with it will have a better quality of life.

“The pharmacare proposal would address barriers to access by eliminating the existing gap in public coverage of essential prescription drugs,” says Craig Earle, vice president of cancer control for the Partnership and a practising oncologist at Sunnybrook Hospital’s Odette Cancer Centre in Toronto. “By doing so, it would also improve the equity of access to cancer treatment for Canadians.”

Jenn Gordon, director of operations at the Ottawa-based, patient-led Canadian Breast Cancer Network (CBCN), says that access is a big issue for people with breast cancer, not only in terms of the inequities seen across Canada, but also when it comes to affordability and wait times.

“For some of our patients, the drugs and other treatments they need aren’t always accessible or affordable,” she says. “Even supportive medications like anti-nausea treatments or drugs that help stimulate the production of white blood cells are not always accessible. That’s when we see the GoFundMe pages pop up so people can afford what they need to maintain a decent quality of life.”

But not everyone sees the struggle in quite the same way. In an opinion piece written last September for a Toronto newspaper, the Financial Post, the CHPI’s Skinner wrote that it is a misperception that many Canadians cannot afford their prescription medicines. Rather, he argued, it is “formulary exclusions and long waits for new drugs to be covered under existing public drug plans (that) largely explain the medication affordability challenges.” He suggested that public drug plans should match the richer variety of medicines that private plans cover, and assimilate new drugs into their formularies more quickly.

Although the council’s report provided numerous details about the proposed pharmacare plan, it did not clarify how the program would address cancer drugs, except to suggest that the national formulary include all the cancer drugs now provided by hospitals.

“This is just one of so many unanswered questions,” the CBCN’s Gordon says. “We were surprised to not see many direct references to cancer in the report. It is critically important for patients to have access to drugs to manage their disease, to improve quality of life and to cure. What medications will make it onto the essential list? Will Canadian patients with cancer still have access to what they have access to now? Will standard of care stay the same? What about waiting times to access treatments?”

Access is on the radar of the Canadian Cancer Society (CCS) as well.

“It wasn’t really clear during the initial consultation if cancer drugs were going to be included,” says Shawn Chirrey, senior manager for policy at CCS. “What we are advocating for, during the federal election, is closing the gaps in coverage for take-home cancer drugs across Canada, so that Canadians have equitable access to lifesaving medications.”

What will make it into the national formulary is a sticking point, too, for the Ottawa-based Innovative Medicines Canada (IMC), an organization supporting the pharmaceutical industry.

“The impact (of pharmacare) on patients will really depend on what drugs will be covered under the proposed national formulary,” a spokesman for IMC says. “Will patients be able to access the same medications they currently rely on? Will they risk having their current treatments disrupted? Will Canadians with private insurance have to accept lower levels of coverage than their current drug plans?”

SYSF’s Binder adds that there needs to be more clarity about how pharmacare would be implemented.

“This was billed as an ‘implementation’ advisory council, but I could find nothing that looked like steps in an implementation plan,” she says. She suggests that the council’s first steps should have been to close the gaps in access that exist throughout the country, exempting the poor from deductibles, co-pays and dispensing fees, as well as implementation of the most comprehensive drug list (Quebec’s) for the near term.

The CanCertainty Coalition — a network of more than 35 cancer patient groups, charities and caregiver organizations working to ensure that every Canadian with cancer has access to the treatment they need no matter where they live &mdash; is in favour of the plan, but also stressed that patients with cancer can’t wait until 2022 for it to kick in.

Very soon, eager candidates will be knocking on doors, using pharmacare as a way to get votes, and when they do, Binder wants Canadians to be ready with their asks.

“Ask them what they mean by pharmacare,” she says. “Ask them how they believe their platform is going to help people right now, today — in a country that prides itself on its universal health-care system &mdash; to pay for the drugs they need to stay alive and healthy.”

For Gordon, the at-the-door conversation seems pretty simple.

“Ask them about commitment,” she says. “Are they committed to Canadian patients? They need to know that lives are at stake.”

Formosa has her own advice. She finished her treatment for melanoma and, in July, got the all-clear report from her doctor.

“Ask what happens if you are diagnosed with a serious illness like cancer,” she says. “Will your medications be covered? Will you have to worry about your life and paying for your drugs?”

A government advisory council has proposed a plan to institute universal pharmacy care, eliciting a variety of opinions from stakeholders. Here’s what it recommends.

A Healthy Debate Over Universal Pharmacy Care in Canada

IT HAS BEEN ALMOST a year since 65-year-old Phil Arner had a stem cell transplant after living with myelofibrosis for seven years. For his wife Karen, the experience was life changing.

“I knew that a stem transplant was going to be a difficult process for Phil,” she says. “But I had no idea how physically draining it would be on me. I thought I was prepared, but I wasn’t.”

Karen, who is 64 years old, was in Toronto, Ontario, on September 29, 2018, to share her story at the fourth annual Canadian MPN Conference.

Selected as this year’s MPN Champion in the caregiver category, she says that what kept her moving forward was remembering how important it was to take care of herself. “The advice I would share with other caregivers is to be in tune with yourself,” she says. “Exercise to manage stress, reach out to people who care about you, take any help offered and keep hope alive, no matter how difficult.”

For 74-year-old Edward Pascal, recognized as an MPN Champion in philanthropy, the biggest challenge after he received a polycythemia vera diagnosis in 2004 was lack of information.

“I discovered that the awareness of MPN was very limited. Diagnosis was frequently not available, and neither was access to treatment by a hematologist,” says Pascal, who supported the founding of the MPN clinic at Jewish General Hospital in his hometown of Montreal.

“The importance of patients being their own advocates for MPNs with other patients cannot be understated,” he says. “There is tremendous value in sharing our experiences.”

Pascal, together with the McGill University’s Faculty of Medicine, Continuing Professional Development Office, also helped develop an MPN educational module as part of the oncology courses for practicing physicians, medical students and other health-care professionals to foster awareness of MPNs and improve patient outcomes.

Given Pascal’s passion for education and awareness, it makes perfect sense that he would also be involved in the establishment of the newly formed Canadian MPN Research Foundation.

“The foundation will serve as a platform to discover new treatments for MPN patients, prolonging their lives and hopefully finding a cure,” he says. Pascal isn’t the only one working to improve patient access to MPN expertise. Two years after his wife Elizabeth was diagnosed with myelofibrosis, Tony Comper established the Elizabeth and Tony Comper MPN Program at Toronto’s Princess Margaret Cancer Centre to focus on advancing research and improve outcomes for people with an MPN.

As he accepted his award recognizing him as an MPN Champion in the category of philanthropy, Comper said that his wife, who passed away at the age of 69, received comprehensive care. But he noticed that her doctor, Vikas Gupta, MD, FRCP, FRCPath, had relatively little support because of a lack of resources, which are often allocated to more common diseases.

“Before my wife passed, it was her desired intention that we provide support to allow Vikas and his colleagues to institutionalize the kind of care that he was providing to her and to others,” he said. “My wife’s belief was that one person could make a difference. One person can make a difference. Multiple people can make a difference. It’s all about advocacy and getting the message out. And it’s about all of us providing the support needed to overcome this class of diseases.”

The 2019 MPN Champion Awards will be held on September 21, 2019. For information, email canadianmpnnetwork@gmail.com

The 2018 MPN Champion Awards celebrate Canadian patients, caregivers and supporters.

Moving MPNs Forward

CHRONIC LYMPHOCYTIC LEUKEMIA (CLL), the most common leukemia in adults, has been the focus of headlines in recent years because of enormous progress in its treatment.

Within the past six years or so, seven novel drugs have been approved by Health Canada to treat the condition. Four are monoclonal antibodies: Rituxan (rituximab), Campath (alemtuzumab), Gazyva (obinutuzumab) and Arzerra (ofatumumab). Three are small molecule inhibitors: Imbruvica (ibrutinib), Zydelig (idelalisib) and Venclexta (venetoclax). Treanda (bendamustine), a standard chemotherapy agent, was recently approved in combination with Rituxan.

These new treatments would be great news for both clinicians and patients, except that they are not equally accessible across the provinces. In fact, Canada's numerous health systems mean that what patients have access to is often determined by their postal code.

Still, as CLL care continues to change, so does the outlook for those living with it.

CLL originates in the bone marrow, where blood cells form. The B lymphocytes, a mature type of white blood cell, start to grow and survive beyond their normal life span. These leukemia cells may look somewhat normal under a microscope, but they reproduce too rapidly, survive longer than normal cells and crowd out other blood cells — mainly the red cells, which are involved in oxygen delivery, and platelets, cell fragments that help with blood clotting. In severe cases, the number of neutrophils, white blood cells that are part of the immune system, may be affected.

The cancer cells receive growth and survival signals from both the bone marrow and the lymph nodes, which causes them to circulate through the blood system on a regular basis. As a result, patients may have no symptoms at diagnosis except for an abnormal lymphocyte count.

Each year, about 2,500 people are diagnosed with CLL in Canada, and about 600 people die from it.

At diagnosis, most people with CLL are not aware of having any symptoms, says Versha Banerji, MD, FRCPC, a hematologist in the CLL Clinic at the University of Manitoba and CancerCare Manitoba. “Very often, the primary physician will see an elevated white blood cell count during a routine blood test,” she says. “Sometimes patients may have fevers, chills and noticeable weight loss, but this is mostly in advanced stages of the disease.”

These symptoms — in addition to fatigue, changes in appetite and sleep, bleeding or bruising easily, and/or enlargement of the spleen, liver or lymph nodes &mdash; call for a visit to a doctor.

CLL can be diagnosed by a simple blood test. “If a person comes in with a high white cell count, we basically use flow cytometry (a type of electronic cell analysis) to look for CLL cells,” says Banerji, who sees about 1,000 patients every year. “If the result is positive, the patient is sent to the CLL clinic for a treatment plan discussion.”

There are two staging systems that doctors use to predict disease progression: the Rai Staging System and the Binet Staging system. Banerji uses the Rai system, which classifies CLL into five stages ranging from low-risk to varying degrees of high-risk, which are associated with the presence of enlarged lymph nodes and/or spleen, elevated lymphocyte counts, a low platelet count and/or low levels of hemoglobin, a protein whose job is to transport oxygen within the body.

“Determining the right treatment plan for CLL is more complicated than it has ever been,” Banerji says.

Initial standard treatments can range from watchful waiting to chemotherapy for intermediate- or high-risk CLL.

Targeted therapies are used after chemotherapy if the cancer is no longer responding or has recurred. Stem cell transplants are still available, but are no longer considered part of routine care. Banerji considers three factors in determining treatment: age, fitness and molecular markers.

Age is broken down into two categories: 66 years and above and 65 years and below. Fitness is scored using the CIRS illness rating scale to predict a patient’s ability to tolerate certain treatments, with 6 or below being considered fit and 6 or above deemed unfit. This grading is subjective but has been used heavily in clinical trials for CLL. Identifying molecular markers, such as genetic mutations that are treatable with drugs, is also very important.

“Molecular markers can help us determine which patients can live for long periods without treatment, and those who will have progressive disease,” she says. “The ability to identify these markers has really changed the CLL experience for many people.”

One example is a test that looks for a mutation in the IgVH gene.

“We know that people with IgVH mutations tend to have better outcomes than those with unmutated IgVH,” she says. “But we need the test to tell us, and in Manitoba, for example, we don’t have access to it.”

Unfortunately, not every patient with CLL has access to these tests.

“Canada is fragmented when it comes to testing capabilities,” says Banerji. “It is frustrating as a clinician and for patients who may not be getting treatment that is as appropriate and targeted as it could be.”

As in several other provinces, unless there is a compassionate program offered by a manufacturer or the patient has private insurance, the only options left are to pay out of pocket, which can be quite burdensome, or to opt out.

This has prompted Banerji to take on the role of advocate in addition to her busy role as a clinician and senior scientist. Together with her clinical team, she is working with the provincial diagnostic labs and CancerCare Manitoba to make treatment-guiding tests like the one for IgVH available in Manitoba.

Even without more universal access to such tests, the outlook for patients with CLL has improved greatly. “We have so many more options in CLL now than we did even 10 years ago, and it has changed everything,” Banerji says. “Early discussions with patients used to be desperate. Now we are more hopeful. Before, we would tell a patient that chemotherapy or a transplant was the treatment, and we would deal with side effects as we went along. Now, we have choices.”

Patients are also playing a more active role in their own health.

“Patients are engaged more than ever,” she says. “We not only talk about prognosis, but also about what they want out of their life and what their goals are for the future.”

Despite all the good news in CLL, a cancer diagnosis is still scary for most. Connecting with a community that is familiar with the journey can be critical not only to better understanding the disease, but to moving forward through treatment.

One of these communities is the Canadian CLL Patient Advocacy Group, which can be reached at cllpag.ca. Other resources include the Leukemia & Lymphoma Society of Canada, Lymphoma Canada and Lymphoma Coalition.

“CLL can be a challenging diagnosis,” says Deborah Baker, past chair of the CLL Patient Advocacy Group’s Board of Directors. “One way that patients and caregivers can feel more in control is by accessing a community of people who share their experiences. These people are valuable sources of education, advice and support, and in the end, these connections can greatly improve outcomes.”

This article is part of the Bringing the CLL Community Together program. Funding is provided by an unrestricted educational grant from Pharmacyclics, an AbbVie Company, and Janssen Biotech, Inc.

Patients with CLL can benefit from improved treatment options, but some are waiting for equal opportunity to testing and drugs.

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